2 in 3 cancer patients say doctors didn't bring up cosmetic options

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Most doctors don’t talk about breast reconstruction with women before cancer surgery, depriving them of key information that can sway their decision about whether to have the whole breast or just a lump removed, new research suggests.

Rates of women who are opting for preventive mastectomies, such as Angeline Jolie, have increased by an estimated 50 percent in recent years, experts say. But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring.

Only one-third of the roughly 1,200 women in the study said surgeons discussed cosmetic remedies with them in advance. When the topic did come up, women were four times more likely to choose the more drastic operation, mastectomy.

That could be because they liked the breast reconstruction options, which include implants that are not available for fixing odd-shaped defects left after lumpectomies. But mastectomies can be a dubious choice because breast-conserving lumpectomies usually suffice.

“Our point is not to say that one decision is better than another, but that women need to know all their options,” said Dr. Amy Alderman, the University of Michigan plastic surgeon who led the study. “There are positives and negatives to both. We shouldn’t be paternalistic and tell patients, ’This is what you need.”’

It is the second report in recent days to call attention to the often-neglected cosmetic consequences of cancer surgery. Studies at last week’s San Antonio Breast Cancer Symposium highlighted some of these, including the limited options for millions of women left with dimpled or cratered breasts after lumpectomies.

Doctors say the latest study, done in more than 100 hospitals in the Detroit and Los Angeles areas, may overstate the doctor-patient communication problem, but they acknowledge that one exists.

“I would bet that we have been so obsessed with treatment that this quality-of-life issue is one that we just haven’t focused on,” said Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Breast cancer is the most common major cancer in American women. More than 178,000 new cases are expected this year in the U.S., and more than 1 million worldwide.

For cancer that has not widely spread, most women have a lumpectomy, but some need or prefer a mastectomy. Alderman studied whether knowing about breast reconstruction swayed which treatment women chose.

Researchers surveyed 1,178 women three months after breast cancer surgery, from 2001 to 2003. One-third said reconstruction never came up in discussions with general surgeons before their operations.

Younger women were more likely to have had this talk than older ones (the average age was 56 for those who did versus 61 for those who did not). More educated women also were more likely to discuss it. Who brought up the topic — patient or doctor — was not asked.

The National Cancer Institute paid for the study.

Women who see breast specialists rather than general surgeons may be more apt to get plastic surgery consultations, Lyerly said. Many women want to conserve breast tissue, and a surgeon must make sure that medical issues are not outweighed by body image concerns.

“If we provide too much information, that’s also not the more effective way of communicating either,” he said. “It could be that they’re so fixed on other issues that two sentences on breast reconstruction totally was not heard.”

However, treatment guidelines do not spell out what doctors should say and when, so “this study is likely to get some traction for that very reason,” Brawley said.

Dr. Sameer Patel, a reconstructive surgeon at the Fox Chase Cancer Center in Philadelphia, said some doctors are too focused on the medical part of the decision about what operation to have.

“They’re trying to take care of the cancer, and that (cosmetic impact) takes a back seat,” he said.

Debbie Horwitz, 35, of Raleigh, N.C., encountered that attitude three years ago, when she found a cancerous lump. Her mother had died of breast cancer and her grandmother also had the disease, so when tests showed she had a mutated gene raising her risk of future tumors, she had a double mastectomy.

“I was really frustrated to find out there were no process pictures of what the reconstruction process would be like,” she said. “It’s a months-long process. There were a lot of before and after pictures, but there’s a lot that happens in between.”

She formed a support group and wrote a book featuring more than a dozen photos graphically depicting her own reconstruction — “Myself: Together Again” — sold on Amazon and other outlets.

If doctors do not discuss reconstruction options in advance, “it’s unfair and I think it’s unethical,” she said. “If you were going to take off somebody’s arm, or a leg had to be amputated, you would talk to them about prosthetics. I don’t understand how doctors can leave that part out.”